Chapter 629 - The Path is Dipping Again

 We reached the end of our COVID isolation last Thursday none the worse; life was expected to return to normal, ours that is not yours. Saturday was a better than normal day, at least in some respects. Her fingers were not curling into fists which has been happening lately. At 0730 she said "I'm dying for a drink" so I gave her 100ml of water then 10 minutes late she wanted more, so another 200ml. She asked to eat her small tub of diced apricots without assistance, then asked for melted cheese on toast. So I prepared the toast without crusts for her, but "it wouldn't go down", meaning she was unable to swallow the bolus formed in her mouth.

A short time later I noticed her hands were curling into fists, the right more than the left. She wanted a cold fizzy drink while I went to buy some mugs with handles, the type suitable for young children. On my return she was humming; a good sign I thought! I put 200ml of mango smoothie in one of the new mugs; disappointed to see her difficulty holding the handles. A short time later she dropped the mug into her lap, and even though the drinking spout is reasonably small the majority of the smoothie was in her lap, seated in her wheel chair, before it dribbled onto the floor.

After the mess was cleaned she wanted to sew so I made space in her sewing room and wheeled her in there. She was soon "speaking" to her sister about whether she wanted some of her fabrics. Then later as she folded a piece of fabric she said "I would not mind some water"; most unusual, normally she does not ask for fluids. That evening I gave her a slice of chocolate cake and ice cream for sweets. Shortly afterwards I found it to be a crumbling sticky mess to be cleaned from her lap, wheel chair cushion and the floor. Later. as I put her to bed, she again asked for more water to drink as well as some wool and a crochet needle with which she failed to even cast on one stitch.

A very different day was  Sunday. At 0310 she was awake, she was "Just nice. Is it time to get up yet?" Her Duodopa pump was beeping with a high pressure alarm at 0615, the tubing had kinked and the pump only required to be repositioned to clear the alarm. It was not possible to say how long the alarm had lasted. At 0820 as I slid her onto the commode she belched then vomited green bile and shortly afterwards a yellowish phlegm. She was unable to accept a sip of water. I returned her to bed and replaced her wrap around pants. Her vital signs were 36.4C, 121/76 and 86, and 96% oxygen and 88. I rang a COVID 1800 number and spoke to a nurse who suggested the problem sounded like reflux and to call back should the symptoms continue. At 1035 she was breathing deeply and slowly and asked for water. By 1145 she felt better so I showered her. She drank 100ml of water containing one sachet of Movicol at 1245 before I gave her three teaspoons of SPC diced apricot which was coughed back up. Fifteen minutes later she coughed up a blob of clear, thick phlegm then there was thick clear strings of snot on her fingers and shortly after her vital signs were 38.2C, 105/79 90, and 91% oxygen and 90. Her temperature remained between 37.1 and 38.5 for the next hour and she continued to dribble snot and drooled phlegm. About 1500 I pressed our emergency alarm, gave my concerns to the operator who alerted the ambulance service who rang and asked the details of our emergency. A Paramedic was dispatched and at our place in about 15 minutes. A member of our village management arrived about the same time. The Paramedic used one of our RAT's which indicated positive, took a blood test and ear canal temperature which was 39.1C. Meanwhile the patient dribbled snot and spit. The Paramedic said all that need to be done at the moment was Panadol every 4 hours and regular Hydralyte drinks so we decided, bearing in mind the complications with Duodopa pumps and I would be unable to enter the hospital, that she should remain at home.. By 1800 she was 37.6C and no longer dribbling snot or drooling and at 2200 36.2C.

Then through the dark hours of Monday morning while attending to her and having her drink soluble Panadol, she was often in a cataleptic state (quoting from "Silas Marner"), assuming that may be due to my not having given her a Symmetrel capsule the day before, and one was not given to her until 1300, because the capsule is very small and could easily enter her breathing passages. After her morning shower she asked to return to bed, remaining there until lunch time. She was unable to swallow a small piece of crumpet she wanted for breakfast. At times she needed to clear her mouth of spit. 

I suppose we continue in a state of isolation until this coming Easter Sunday. No longer I hope, for some short time ago someone close suggested I seek assistance from palliative care. After searching in circles for contact details I rang our local Community Health, was given an 1800 number and left my details, not expecting a rapid response. Not so, because a nice person responded, checked our details and made an appointment to visit us next Wednesday 20th April. I am glad the appointment was not made for yesterday; perhaps by next week she may be better able to cope with visitors.

She is unable to take solid foods since this experience. I need to coerce her to even take Sustagen and whey products as thick fluids because she seems to tire of taking a mouthful at a time from the spout of small beakers then swallowing. Her dyskinesia problems may have lessened but her hallucination problems have certainly increased and of a less benign nature.